Creating a Rare Disease Community

Researchers find common ground while connecting people with different rare diseases.

By Patrick Mairs
09 Apr 2018

Calvin College professors Rachael Baker (left) and Amy Wilstermann conduct research in a laboratory on the school’s campus in Grand Rapids, Michigan. Baker and Wilstermann are key members of the college’s Rare Disease Research Group and hosted Calvin’s first-ever Rare Disease Symposium on March 3. (Photo/Calvin College)

For those with chronic medical conditions, grabbing a coffee with someone dealing with the same condition, in order to share experiences, may seem like a natural way to cope. But for people with rare diseases, making those face-to-face connections can be difficult or impossible because of the limited number of people with the same condition. Yet rare disease patients often face similar issues, even though their specific condition may be different.

Rare disease researchers Amy Wilstermann and Rachael Baker, who teach biochemistry at Michigan’s Calvin College, discovered some of those common threads first-hand when they invited several people with different rare diseases to the school’s Grand Rapids campus to speak to students taking an intensive three-week course on rare diseases last month.

“They were all telling us very similar things,” Baker told Vita. “Even though their disease is distinct, their feelings about the experience, the difficulty of working with doctors who haven’t treated their rare disease, the way they’re shaping their children or their family. All of those things are actually fairly common experiences between these different people.”

That common bond was at the heart of the college’s first-ever Rare Disease Symposium earlier this month, an event created by Baker and Wilstermann in order to foster connections and build a local community for people with any kind of rare disease.

“There is some automatic connection between people that have these rare diseases, even though they might have very different diseases,” Wilstermann said.

Connecting people with rare diseases was a natural idea, but finding those people required some creative thinking. Estimates put the number of Americans affected by any of the 7,000 identified rare diseases as high as 30 million, so the professors knew they had a sizable pool of people to reach out to.With that in mind, they announced their symposium with fliers on telephone poles, listings in church bulletins and even by walking in a local Fourth of July parade to hand out information.

“People would say, ‘Oh, I’m rare’ or ‘I’m a zebra’ and they would grab the flier and be excited that somebody was acknowledging this,” Wilstermann said.

The offbeat outreach strategy worked. Nearly 200 people attended the symposium on March 3. The group was a mix of students, healthcare professionals, people with rare diseases and those who care for them.

“It was really exciting to watch people get to connect with each other over these common experiences and find a venue to share some of their own story and their frustrations and challenges,” Baker said.

Attendees listen to a presentation at Calvin College’s Rare Disease Symposium on the school’s campus in Grand Rapids, Michigan. About 190 people attended the event on March 3. (Photo/Calvin College)

A recent study showed a link between rare disease, anxiety and depression and that connecting to other people with the same disease could help improve quality of life. Many rare disease advocacy groups sponsor periodic gatherings to bring affected people together from across the country or the world. But even if patients are able to attend one of those events, Baker says it’s important for them to have someone who can empathize with them at home.

“You meet people from other places but then you go back to your place and still there’s no one there,”
she said. “So you still feel locally isolated.”

Baker and Wilstermann hope the gathering becomes a regular one and the foundation of a local rare disease community that includes medical experts as well as patients. As the core members of Calvin’s Rare Disease Research Group, they want to connect healthcare professionals in the region and inspire their students to take on the challenge presented by rare diseases.

“We want them to start to get an awareness that we need to be looking out for patients that have symptoms that we haven’t seen before and thinking about how to be diligent and care for them well,” Wilstermann said.